CF patients need more hospital rooms 'urgently'

There is an urgent need to increase the number of cystic fibrosis (CF) in-patient rooms at Beaumont Hospital from seven to 20, a charity has claimed.

The hospital treats more than 150 adults with CF on a continual basis and more facilities are needed, according to Philip Watt, the chief executive of Cystic Fibrosis Ireland.

"Since the start of the economic crisis, we have seen progress in some areas of cystic fibrosis care, but also significant cutbacks in services with staff shortages and delays in developing and opening vital hospital facilities," he said.

delay

Mr Watt referred to the ongoing delay in the development of a new children's hospital where all children with CF will be treated.

He also said a number of key infrastructure developments need to be urgently carried out.

Among them is the need to increase the number of CF in-patient rooms at Beaumont and the commencement of a paediatric ward block in Cork University Hospital that will incorporate a CF unit.

He said that while there has been a welcome increase in the number of CF lung transplants, it has been a case of "two steps forward and one step back".

"We are still waiting for the introduction of soft opt-out for donor consent," he said.

"Many more lung, heart, kidney, pancreas and liver transplants could be undertaken if soft opt-out was brought in."

Ireland currently uses an opt-in system, which means people must express consent before their organs can be donated.

Some countries in the EU have already swapped to an opt-out system, where patients would have to express their wishes not to donate.

Mr Watt was speaking as the charity launched its annual 65 Roses awareness and fundraising appeal which will run from April 20 to 26 and be fronted by rugby commentator Paul Wallace and Fair City star Jenny Dixon.

Volunteers will sell pins and silk purple roses with a fundraising target of €100,000 for CF research, the development of new CF health facilities and the provision of patient grants.

The disease affects 1,200 children and adults across Ireland each year.

Attending the launch was Cavan mum Lorraine O'Neill, who said that when her daughter Mia (6) was diagnosed with CF, it was one thing she knew nothing about.

She said she found CF Ireland and the Cavan branch "great for explaining things - it's an illness and there's a lot of learning in it".

susceptible

"There's a lot to your daily routine with nebulisers and physiotherapy and there's a lot of going on. The branch are great for giving you a shoulder to lean on," she said.

"We need the extra funds so that we can facilitate CF patients when they go in as in-patients. They must have their own rooms because with CF you're susceptible to infection all the time so you can't mix with other patients. That's one thing in Ireland that we don't have."